Tag - rare disease

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Are You #BOSAware?
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A Decade to Diagnosis
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To The Mom Whose Child is Undiagnosed

Are You #BOSAware?

A Decade to Diagnosis

 

It’s the eve of Campbell’s birthday and I can’t help but reflect on the last eleven years, particularly the last few months. This past October, we finally received a diagnosis for her unexplained symptoms after a decade of searching for answers.
I wrote about our journey in a blog post where I attempted to give advice to other parents facing the prospect of having a child with an undiagnosed syndrome. I talked about making peace with not knowing several years a go, yet I occasionally wondered if the day would come when we would have a “why” to the cause of her complex medical needs.

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To The Mom Whose Child is Undiagnosed

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I noticed you right away as I walked into the waiting room at the geneticist office. You were the mom with the binder stuffed full of medical information pulled from the Internet, just like I was ten years ago.
I could hear you talking excitedly to your husband who was holding your son in his arms. You were optimistic that you’d finally discovered some information that might lead to an answer to your son’s problems.
I listened as you used language that would make a bystander think you had a medical degree, but I knew the truth. You were self-taught by the indomitable will and determination of a mom searching for answers.
I watched as you gathered your belongings when the nurse called your son’s name and we made eye contact briefly. We smiled at one another but I caught the questioning look in your eye. I knew you wanted to ask about our story.

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